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Tuesday, January 25, 2011

BIG TYSON UPDATE! (For my Spina Bifida Peeps!)

2 Years ago today I received Ty's diagnosis, MyelomeningoceleSpinaBifda, Charii I Brain Malformation and Hydrocephalus. It was by far the worst day of my life. I remember the day very clearly and the weeks to follow. I felt very alone scared, mad, angry, bitter and questioned so many things in my life. I cried until I had no tears left. For some reason heavenly father knew Tyson is just what are family needed and we could handle it. I feel so very blessed to be Ty's mom. He has the cutest personality and taught me so much about life. We learn from our trials. I would have never imagined by life would change so much in such a positive way from such a awful thing.I look at him everyday and am so amazed about the miracle he is and what we experienced together. I am so so grateful for the MOMS study. It was a incredible growing experience for me and I feel so blessed to be a part of it.

Tyson is doing so well. Although today I had a slight melt down to the physical therapist. His balance sucks and it freaks me out a bit that it would stop him for walking on his own. I just want the therapist to reassure me that he will walk. She won't and does not seem to positive about the situation. He has been working so hard and he usually has a smile on his face. We have been going to therapy twice a week and then working with him at home. His trunk and legs are getting stronger. He is cruising in his walker. It is so great to see him use his legs. We are working so hard to get him to walk on his own. The day he takes his first step on his ownI know my heart will melt. I cry just thinking about it. I have waited two + years to see this moment.

Lately I have looked around and realized how different Tyson is. At church some "Punk" kid kept knocking Ty over every time he stands up( His teachers told me). Ty is the only one in nursery who does not walk. I just want to go up to toddler and knock him over and say to him do you realize how hard we have worked to get him to stand. Although I don't it seems like all the kids his age are progressing so much and we have been at a stand still. I know he will walk we just need a little bit more strength and a boost of confidence. Although I have definatly been feeling a little less optimistic.

We went to SpinaBifida Clinic last Friday. Sometimes it feels like a waste of 5 hours and hundreds on dollars but we got a bit of information mostly everything we already knew. We are continuing to cath Ty every 4 hours. It is really no big deal now besides the fact that some days I just feel like I want a day off from it. He still takes Ditropan to relax his bladder. I am thinking that is probably how it will be for the rest of his life. The doctors think it is pretty likely we will be cathing for life. I still have hope though. But if we do have to do it for life. It's no big deal. We treat like it's not a big deal and it won't have to be a big deal for him. Who has to know anyways?

Neurosurgery is completely thrilled with Ty's progress and "NO Shunt" YEAHHH!!! What a blessing! They say very slim chance he will ever need one. Orthopedics was very impressed by his progress with the little AFO's. I really love the Ortho doc. such a stud and so personable. I think he was secretly in love with Chloe. Anyways he was very optimistic Ty will walk on his own. Nutritionist lady is crazy and treats us as if were new parents. Whatever! The main issues we have is his speech. He does not talk which freaks me out seems how Chloe at this point was speaking sentences. Now we get to add speech therapy to are list of appointments. It good thing I love TY so much! He does not talk at all. Not a single word just gabbers. The main thing to watch for is signs of a tethered cord. Poor baby let's hop the tethered cord thing doesn't happen for years.

The next thing I need to update every one on is Ty's vision. Patching is miserable and I feel like worst mom ever seems how he screams for an hour and we have to hold his hands down. We are trying to better at it. Dr. Hoffman acts like we might have to remove thecatarct because it is quite large and over the center of his eye. Then we get the dreaded glasses back. We got a new med. cycomydril, which dilates his eye all day. This is to help him see around the cataract. Now he gets to learn to walk with one dilated eye and two different size pupils. FUN huh! We see Dr. Hoffman tomorrow so I am sure will have more eye news soon. For now THERAPY THERAPY THERAPY till this little man walks. Yesterday he absolutely hated it and was miserable. He worked so hard.

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SB

Background

Hi!

We are The Thomas Family! I am Jessica mom, wife and nurse. Jared is a railroad man. He works for Union Pacifc Railroad Jared and I have been married for 6 years. We have a 5 year old princess Chloe and a 2 year old stud Tyson. Tyson was born with Spina Bifida and Charii I Brain malformation. We had sugergy in utero on him and I on Feburuary 26, 2009. We were part of the MOMS study. To read more about Tyson read his blog by clicking on his name. Also for more information on the MOMS study visit http://www.spinabifidamoms.com/. Enjoy!

Princess Chloe!

Chloe Anna Thomas

She's 5. She is 100% girl. Her favorite Color is pink. she is obsessed with Disney Princesses and claims she is one. She loves to get dressed up and already has a opinion on what she wants to wear. She also loves her baby brother. She keeps us busy and makes us laugh everyday.

Tyson

Click on the image to visit Tyson's "website

Tyson Jared Thomas

"Our miracle baby". 2 Years old. He was Born at 4lb.s 3 oz with Myelomeningocele Spina Bifida and severe Charii I brain malformation. He is so chill! He has aready brought much joy into our lives. We love him so much! He is such a boy and loves making messes and the outdoors.